Lipkin bad news folks

[TessDeco]

I can't get it to play. It's not a live transmission though, so I hope that once it's sorted out, we'll have plenty of time to see it. Frustrating, though!

Yeah, I think they are having technical difficulties with the TWiV. It's not up on Racaniello's Podcast on ITunes either.

 

[Sasha]

Funny, I thought I was going to spend today feeling angry (because I was anticipating crappy UK media coverage) but actually I feel really happy! I was so impressed by the press conference and the attitude of the scientists. It's been a good day.

 

[Firestormm]

I shoved the full paper on it's own thread in case anyone wants to discuss once they've had a chance to read it all:

http://forums.phoenixrising.me/inde...between-cfs-me-and-either-xmrv-or-pmlv.19420/

Just listened/watched the press conference recording (http://cii.columbia.edu/blog.htm?cid=tM5E7V). Thought it was pretty good. Let's hope some of the positives do get the funding required to see them explored more fully. I heard tell that some of the samples had already been accessed by two studies (or applications had been received) which sounds good to me.

Old Lipkin is a one isn't he? 'Make some noise' he said. Well I guess that's what you gotta do to keep the government on it's toes and sending money in our direction. I also liked his positive endorsement in relation to (I forget the specifics) but that essentially the people he has tested are indeed sick...

Dang me memory cell's misfired. Calls for a transcript I suppose. It's a wonder we have the time to be sick what with all this stuff we have to absorb. Far too confusing for even the likes of the Daily Wail and other less than credible newspaper sources too

TWiV still not up and running? Darn. Oh well a good excuse to catch up with other things.

MEA issued a statement: http://www.meassociation.org.uk/?p=12822 It would be welcomed I think to get an apology from those pushing the tests. Not that there would be one forthcoming I don't suppose. To do so would be to admit liability.

I thought this article was better than some we have seen thus far: http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/34812

I wonder if Science and Cohen will be putting something together.

 

[Firestormm]

Oh and this analysis of the events from research 1st including the following explanation which was also covered by Lipkin at the press conference (and darn it I just realised we have another thread for the press conference! Oh bums):

There were some positive results returned by the NCI-Cornell-Mikovits team using another method that looked for antibody reactions to these agents.

Dr. Francis Ruscetti’s NCI lab tested serum from the coded samples using a flow cytometry-based assay slightly modified from the one he reported in the original 2009 Science paper.

The team detected antibodies in human serum but when the code was broken, it revealed equal numbers of CFS cases and healthy controls had these antibodies – nine in each group, or six percent of the subjects.

The paper states, “The serology results are more difficult to address given that the assay cannot be validated with plasma from humans with confirmed XMRV or MLV infection. We posit that positive results represent either nonspecific or cross-reactive binding and note that irrespective of explanation, a positive signal does not correlate with case status.”

Nonspecific, cross-reacting antibodies are common and can be the bane of many diagnostic serology platforms.

When serology assays for HIV were first developed, serum from healthy, non-HIV infected people sometimes contained antibodies that reacted with HIV proteins in the assay.

Blood transfusion studies showed that this non-specific antibody pattern did not correlate with transmission of HIV.[5]

It is this type of non-specific reaction that has led to development of HIV screening tests based on antibody testing; positive results from such tests are followed with other testing methods considered to be confirmatory.

To avoid drawing incorrect conclusions about the presence of virus based on the antibody reaction alone, it is imperative to use appropriate control experiments in parallel.

In the 2009 study and this multicenter study, a monoclonal antibody produced from a rat (7C10 rat monoclonal antibody) was used in the tests.

However, this particular antibody has been shown to cross-react with a number of other different viruses when it was originally produced in the early 1980s.[6]

As the authors indicate in the mBio paper, the fact that the positive antibody signal was found in equal numbers of CFS case and healthy control subjects’ serum is strong evidence that it is a sign of nonspecific cross reactivity with no clinical relevance.

It is also worth noting that study authors agreed in advance that the only “subjects with two positive results in the same sample type were considered positive for XMRV/pMLV.”

The 18 samples that tested positive by this method did not meet the stated standard for a “positive” result as agreed to by all the authors.

The De-discovery of XMRV: http://www.research1st.com/2012/09/18/the-de-discovery-of-xmrv/

 

[CJB]

Old Lipkin is a one isn't he? 'Make some noise' he said. Well I guess that's what you gotta do to keep the government on it's toes and sending money in our direction. I also liked his positive endorsement in relation to (I forget the specifics) but that essentially the people he has tested are indeed sick...

r.

I just got to the part Fire - had to rewind and make notes. He said there was a tremendous amount of immune reactivity in a study they were doing in the late 90s trying to find a connection the Japanese had reported with a virus that starts with the letter B (sorry). He said 2/3 - 3/4 of the patient group they were studying had poly-clonal (sp?) B-cell activation. "They are sick. We don't know why they are sick, but they are sick." In response to those who were trying to paint this as a psychosomatic (his word) disorder. It's at right around the 29:00 mark.

Good stuff.

 

[Firestormm]

Thanks CJB. I think the whole 'tone' of that part was to be welcomed. Indeed rather than this whole sheebang being dismissive and critical it has turned an otherwise (for some) negative day into a positive (if I may be so bold).

Go Obama

 

[CJB]

Thanks CJB. I think the whole 'tone' of that part was to be welcomed. Indeed rather than this whole sheebang being dismissive and critical it has turned an otherwise (for some) negative day into a positive (if I may be so bold).

Go Obama

That leads me into the next comment of note (IMO) at about 32:30. He says there is no question that leadership will respond to political pressure and then begins to talk about HIV and autism advocacy.

If anyone still thinks that politics has no place in ME/CFS discussion, I hope they will listen to what he has to say. Getting more organized around this is essential. He also admits how very difficult that is for the chronically ill.

I love this guy.

 

[leela]

That leads me into the next comment of note (IMO) at about 32:30. He says there is no question that leadership will respond to political pressure and then begins to talk about HIV and autism advocacy.

If anyone still thinks that politics has no place in ME/CFS discussion, I hope they will listen to what he has to say. Getting more organized around this is essential. He also admits how very difficult that is for the chronically ill.

I love this guy.

totally agree! he is great, and he snuck in a whole bunch of really good points!
love him!

 

[currer]

Yes, I am glad he says this;
I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.
http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

 

[Sasha]

I agree, currer - we wouldn't have the future we now have if it wasn't for Mikovits, and we wouldn't have such a clean entry into it if she hadn't bravely admitted it's all over for XMRV and it's time to move forward to other lines of research. Very brave.

 

[Daffodil]

personally, i didnt care too much for most of the questions. i would have liked to see more about the studies going forward, maybe about the limits of sequencing and possibility of recombinant viruses.

i liked lipkin. the fact that he admitted they found some unexplained antibody acitivity in a few samples, shows he is probably objective.

 

[Daffodil]

i fully agree about mikovits. she has been villified and she is largely responsible for all this attention and research we are getting. sure, she could have been less vocal and more "responsible" but i know where that would have left us - in the same situation we were in 10 or 20 yrs ago - dying and with no hope.

 

[jimells]

Experts believe there may be a genetic cause for ME, or it may be triggered by a traumatic event or a weakness in the immune system.

And I could most definitely have done without reading that final paragraph. They do seem to have concluded that a virus is not involved - though one wonders where they think 'weakness in the immune system' might possibly stem from?

What a bunch of turnips

Braindead Turnips at that. What might be the end result of 'weakness in the immune system'? An infection, perhaps? Maybe a treatable infection, if the useless doctors would look for them, instead of just 'treating symptoms'?

 

[currer]

i fully agree about mikovits. she has been villified and she is largely responsible for all this attention and research we are getting. sure, she could have been less vocal and more "responsible" but i know where that would have left us - in the same situation we were in 10 or 20 yrs ago - dying and with no hope.

Yep no publicity is bad publicity.
Visibility - that is what we have always lacked and has allowed the abuse of patients to continue on the quiet.

 

[Firestormm]

Perhaps it was just too political or too complicated to provide a good answer in the short time they had. I don't think I will start looking for reasons or make speculation. Dr Lipkin was willing to discuss it with Hilary Johnson after the press conference. I am sure she will pass on any relevant information.

I didn't notice any weirdness in body language or demeanor. Actually, the head nodding etc matched what was being said in the room.

I think Lipkin and the others were quite clear in stating how this study was wholly aimed at attempting to replicate the results of Lombardi and Lo period. Even to the extent that they looked solely at blood (and not at tissues etc.) because that is all that Lombardi et al did.

Indeed, I thought it was good to hear (not that it should have been necessary) how you can keep chasing your tails to try and close every avenue but that this would be largely pointless without something specific to go on (and the funding to do it).

It was always about the specific hypothesis advanced by Lombardi et al. Always. Even the Lo et al study was a complication but was considered appropriate to follow-up on as it was related primarily to the Lombardi results.

Think I'll try and transcribe that bit actually.

All the other stuff relating to XMRV and e.g. Prostate Cancer is not relevant. Would be nice for others to tie that up and better explain those results but this was always about XMRV and CFS.

Indeed now this paper is out and given the lengths they went to (apparently - I haven't read the paper yet) to exclude contamination - further work on the PC angle might better try to replicate those results (also dependent again on funding).

Let's not forget this 'Lipkin' study cost $8 million bucks. $8 million. I mean. Bloody hell.

 

[currer]

Do you know - and this makes me suspicious - the nature article draws too many parallels between XMRV and Wakefield and MMR for my taste. Smacks of propaganda.
http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

 

[Firestormm]

Do you know - and this makes me suspicious - the nature article draws too many parallels between XMRV and Wakefield and MMR for my taste. Smacks of propaganda.
http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

Currer the article says it cost 2-3 million bucks I thought it was 8. Maybe I was wrong?

 

[Christopher]

@CII722: XMRV & prostate cancer study will be released soon (not from us). We can't discuss specifics because of the embargo.

 

[currer]

XMRV and Prostate cancer are relevant. If its not in one its not in the other.

My interpretation of the reason that Lipkin refused to alow the prostate cancer question to go ahead was because Dr Mikovits stated publicly that she believed there was a public health threat from XMRV .
The prostate cancer researchers did not do that.

So she needed to publicly retract to reassure the public and they did not - hence the pressure on her publications. Prostate cancer and MLVs can be safely forgotten without the need for added publicity..

If research goes ahead on MLVs and prostate cancer we will know something is wrong.

 

[currer]

Currer the article says it cost 2-3 million bucks I thought it was 8. Maybe I was wrong?

You can never trust journalists.